Scleroderma: Impact of the disease

I grew up in a medical family: mom and her mom were nurses, Dad and his father were doctors. My other grandfather sold pharmaceuticals. I’ve always been around hospitals, sickness, and disease. Maybe that’s what compels me to be healthy and take good care of myself and my family. Considering how many conditions and diseases surround us, being healthy is a blessing. And sadly, sometimes, no matter what you do (or don’t do), illness can still fall upon you. Just crappy luck, like my mom getting and succumbing to gall bladder cancer last year. And like my mom’s boyfriend DeWain getting scleroderma.

Most people have no clue what scleroderma is and probably never heard of it. So when I heard that June was Scleroderma Awareness Month, I wanted to write a post to help educate folks. I also wanted to write about this horrible disease that has tortured a man who took great care of my mom for 20+ years, especially during her final months.

Scleroderma, or systemic clerosis, is an autoimmune rheumatic disease of the connective tissue. According to the Scleroderma Foundation, the name comes from two Greek words: “sclera” meaning hard, and “derma” meaning skin. Bottom line -- your skin begins to harden. But it doesn’t stop there. Scleroderma affects joints, as well as internal organs such as the esophagus which makes swallowing challenging and the gastrointestinal tract which causes digestive distress.

DeWain’s most noticeable symptom is the hardening of the skin on his hands and feet. He’s had to undergo extensive treatment to help manage the pain. He’s lost sensation in his fingertips; if you’ve ever burned even the tip of your finger, just multiply that feeling by 1,000.

Scleroderma is not contagious, infectious, cancerous, or malignant. You cannot catch it. Symptoms vary widely from person to person as do treatment options. Over 300,000 people in the US suffer from it and it’s predominantly affects females 4 to 1. While the exact cause is unknown, scientist do know it involves an overproduction of collagen.

Diagnosis of scleroderma is challenging because the symptoms are varied and overlap with other diseases. Some of the key indicators are:- Swelling or puffiness of the hands- Pain and stiffness of the joints- Skin thickening- Digestive issues

To get an accurate diagnosis, doctors experienced in treating scleroderma run tests and review other factors such as family history and symptoms.

The good news is that many of those afflicted with scleroderma have very few symptoms and can lead pretty normal lives. Unfortunately, that is not the case for DeWain who struggles with his hands, feet, esophogaus and digestion. But he has not let that stop him. Even in his 70s, he is teaching and staying active.